Tuesday, June 26, 2012

I am going to admit to being severely geeked out about having gone to New York. I had never been, and didn't really know what to expect. It wasn't as big as I thought, except that it's huge. And it wasn't as, ominous as I expected.

Also - the Holland Tunnel has a Home Depot (just to the left out of this shot, I SWEAR it does on the Jersey side.)

I was in NJ for four days for work and a colleague and I decided to brave the city. In the course of three hours we did Little Italy, Chinatown and Times Square. I call it Griswalding NYC. But time plus parking prices required it. I mean, parking HOLY SHIT NEW YORK.

Not joking, that's mortgage money for the monthly rate in a lot of the US.

But it was exciting, racing through such a small part of the city, and exhilarating. To be adventurous, we ordered something crazy and random off the menu at our chinese restaurant we chose. Jellyfish anyone?

I tried it and my review is, salty, cold crunch horror.

But it wasn't all a nightmare, I also had some red bean dim sum which were amazing and delicious and practically enough to call dinner they were so big. I've never seen red bean paste balls so HUGE!

SO good. Plus, it was just exciting to BE there. To say "I'm in Chinatown, in NYC!" That's probably silly but, at my age, it was sort of a bucket list thing to me. I might never go a lot of places, but now, I've been to New York and SEEN it myself. It's so much different than TV and movies.

I am going to admit to being severely geeked out about having gone to New York. I had never been, and didn't really know what to expect. It wasn't as big as I thought, except that it's huge. And it wasn't as, ominous as I expected.

Also - the Holland Tunnel has a Home Depot (just to the left out of this shot, I SWEAR it does on the Jersey side.)

I was in NJ for four days for work and a colleague and I decided to brave the city. In the course of three hours we did Little Italy, Chinatown and Times Square. I call it Griswalding NYC. But time plus parking prices required it. I mean, parking HOLY SHIT NEW YORK.

Not joking, that's mortgage money for the monthly rate in a lot of the US.

But it was exciting, racing through such a small part of the city, and exhilarating. To be adventurous, we ordered something crazy and random off the menu at our chinese restaurant we chose. Jellyfish anyone?

I tried it and my review is, salty, cold crunch horror.

But it wasn't all a nightmare, I also had some red bean dim sum which were amazing and delicious and practically enough to call dinner they were so big. I've never seen red bean paste balls so HUGE!

SO good. Plus, it was just exciting to BE there. To say "I'm in Chinatown, in NYC!" That's probably silly but, at my age, it was sort of a bucket list thing to me. I might never go a lot of places, but now, I've been to New York and SEEN it myself. It's so much different than TV and movies.

Monday, June 18, 2012

First of all this sign.The internet has killed my understanding language. Because I kept looking at this sign and thinking, yeah, use bottomcushion as flotation - DEF.

So I have to admit now that we were almost to NEWARK before I realized that it was SEAT DEF not, DEF as in "definitely". Ok I am crazy. I admit this.

The other tale is from when we picked up our rental car. We asked for GPS and after going through the routine of upgrades and yadda yadda in order to acquire the said GPS we got into our car and sat there staring at the control panel.

We pushed buttons. We pushed different buttons. We looked at each other. But we just couldn't figure out why the GPS didn't seem to work. "We are smarter than this!" we kept exclaiming to one another.

Finally an employee walked by and we flagged her down, expressing frustratedly that the damn GPS isn't working.

She looks in the vehicle and says "That's the stereo. You don't have a GPS."

First of all this sign.
The internet has killed my understanding language. Because I kept looking at this sign and thinking, yeah, use bottomcushion as flotation - DEF.

So I have to admit now that we were almost to NEWARK before I realized that it was SEAT DEF not, DEF as in "definitely". Ok I am crazy. I admit this.

The other tale is from when we picked up our rental car. We asked for GPS and after going through the routine of upgrades and yadda yadda in order to acquire the said GPS we got into our car and sat there staring at the control panel.

We pushed buttons. We pushed different buttons. We looked at each other. But we just couldn't figure out why the GPS didn't seem to work. "We are smarter than this!" we kept exclaiming to one another.

Finally an employee walked by and we flagged her down, expressing frustratedly that the damn GPS isn't working.

She looks in the vehicle and says "That's the stereo. You don't have a GPS."

Saturday, June 16, 2012

We belong to a local autism support group, which I've mentioned before. One of events that gets held every so often are Sensory Friendly Films, which is easiest explained as low lights but not "dark" and I guess not so loud.Madagascar 3 was the film this weekend and we thought we'd give it a go.I'll tell you, we DO go to the movies, but we spend a lot of time going SHHHHHHH SHHHHHHHH SHHHHHHH and taking one or the other twin OUT if necessary and that's at the cheapie theater.

We don't DO first run. Because oh hell if we paid $100 bucks between admission and snack and it was a nightmare, oh hell no.

But the MOVIE GRILL in Alpharetta sent a notice to our autism group that special needs kids and their siblings were free and adults $5 so HEY CHEAP MOVIE.

It's a bit of a drive over there, but it was actually a PERFECT set up for kids who need structure, sitting at tables facing directly forward - no aisle in front of you to tempt you to get up and run up and down. We had cokes and popcorn and it was awesome. So THANK YOU MOVIE GRILL.

The kids were all variously loud, but they were also kids, they laughed when it was funny (CIRCUS AFRO CIRCUS AFRO) and were quiet sometimes too. Honestly, I didn't even NOTICE the noise of the other kids - maybe I'm numb to it these days.

I think I'm going to keep my eye on the Sensory Friendly films offering now, and if you have autistic kids you should check it out. It was probably the least stressful trip to the movies I've had in years.

We belong to a local autism support group, which I've mentioned before. One of events that gets held every so often are Sensory Friendly Films, which is easiest explained as low lights but not "dark" and I guess not so loud.
Madagascar 3 was the film this weekend and we thought we'd give it a go.
I'll tell you, we DO go to the movies, but we spend a lot of time going SHHHHHHH SHHHHHHHH SHHHHHHH and taking one or the other twin OUT if necessary and that's at the cheapie theater.

We don't DO first run. Because oh hell if we paid $100 bucks between admission and snack and it was a nightmare, oh hell no.

But the MOVIE GRILL in Alpharetta sent a notice to our autism group that special needs kids and their siblings were free and adults $5 so HEY CHEAP MOVIE.

It's a bit of a drive over there, but it was actually a PERFECT set up for kids who need structure, sitting at tables facing directly forward - no aisle in front of you to tempt you to get up and run up and down. We had cokes and popcorn and it was awesome. So THANK YOU MOVIE GRILL.

The kids were all variously loud, but they were also kids, they laughed when it was funny (CIRCUS AFRO CIRCUS AFRO) and were quiet sometimes too. Honestly, I didn't even NOTICE the noise of the other kids - maybe I'm numb to it these days.

I think I'm going to keep my eye on the Sensory Friendly films offering now, and if you have autistic kids you should check it out. It was probably the least stressful trip to the movies I've had in years.

Friday, June 15, 2012

Ok they were actually all three pretty cute. I think the one smiling at the camera took the cake though, he was a total charmer.

So I was walking down the hall carrying a towel to shake out on the front porch (explanation, the twins sit on a bench on a towel and they get it crummy so I shake it out on the front porch) and while I was walking and talking to the husband THAT THING happened again.

Now I can't remember if I blogged it.

Ok well, what happened was, I was sitting at a stop light several weeks ago, months ago now, and I got this cracking/tingling sensation on the back of my skull followed by numbness. Think of the way your face feels after novocaine is administered. Now, put it at the base of your skull. Next have the world sway. I figured it out last night - it is the sensation of walking on a ship at sea. Not on a lake. AT SEA -where there is wave and serious power under those planks of wood beneath your feet.

Last night,walking down the hall this happened all at once. Luckily Scott was right behind me and I was able to lean in to him.

So we called 911.

They did a lot of tests and I stayed till 2am.

What I decided was this.

OMG I am fat that picture is horrendous even if I am having "an episode". Weight Watchers I might need you.

Hospital trips are annoying.

They didn't quite decide anything about me. They ran a shit load of tests, and the neurologist who popped by after I was getting ready to leave said my CT was textbook - they saw nothing abnormal at all. So I'm referred to a neurologist and he suggested an ENT because he thinks it might actually be vertigo. I thought vertigo was spinning but he described as it could feel like you are on a ship and I was like "THAT'S IT!"

Ok they were actually all three pretty cute. I think the one smiling at the camera took the cake though, he was a total charmer.

So I was walking down the hall carrying a towel to shake out on the front porch (explanation, the twins sit on a bench on a towel and they get it crummy so I shake it out on the front porch) and while I was walking and talking to the husband THAT THING happened again.

Now I can't remember if I blogged it.

Ok well, what happened was, I was sitting at a stop light several weeks ago, months ago now, and I got this cracking/tingling sensation on the back of my skull followed by numbness. Think of the way your face feels after novocaine is administered. Now, put it at the base of your skull. Next have the world sway. I figured it out last night - it is the sensation of walking on a ship at sea. Not on a lake. AT SEA -where there is wave and serious power under those planks of wood beneath your feet.

Last night,walking down the hall this happened all at once. Luckily Scott was right behind me and I was able to lean in to him.

So we called 911.

They did a lot of tests and I stayed till 2am.

What I decided was this.

OMG I am fat that picture is horrendous even if I am having "an episode". Weight Watchers I might need you.

Hospital trips are annoying.

They didn't quite decide anything about me. They ran a shit load of tests, and the neurologist who popped by after I was getting ready to leave said my CT was textbook - they saw nothing abnormal at all. So I'm referred to a neurologist and he suggested an ENT because he thinks it might actually be vertigo. I thought vertigo was spinning but he described as it could feel like you are on a ship and I was like "THAT'S IT!"

Thursday, June 14, 2012

This might give a lot of you a shudder, or a wince, because no one likes to hear their children scream. But if you are a parent of severely autistic children, who don't have language, you adjust to the screams. I don't know that you ever get USED to them. But...Charlie screaming isn't the same as the baby screaming. The baby screaming would send me running in terror. Charlie screaming, well, that just makes me wonder what he needs.I called out "Charlie, Mommy is here. You're ok." Sometimes that's enough. Sometimes he just needs to hear me, or his dad, and he goes back to sleep.

About twenty minutes later he let out another blood curdling shriek.

So I got up and went in, to see if Miles had stolen a blanket, or his pillow, or was laying on him or some other brotherly offense. I walked in and sat on the bottom bunk and said "Charlie are you ok?"

And then a miracle happened.

He spoke. "I want water."

Don't get me wrong, Charlie "can" speak. However, as is the nature of autism, speech isn't all that important to him. But this time, at 3:20 am, when we were both bleary and worn out, he said clear as day "I want water."

"You want a drink?" I started hunting for the sippy cup that they take to bed, and that Miles hoards (Geek points to me I nearly spelled that horde) and found it under Miles pillow.

"I want drink." he said as he took it and took big sips.

"Are you ok now?" I asked him.

"I want tickle."

Imma take that as a yes.

I chose a picture from winter, because it's hot, and I wish it wasn't.Tweet

This might give a lot of you a shudder, or a wince, because no one likes to hear their children scream. But if you are a parent of severely autistic children, who don't have language, you adjust to the screams. I don't know that you ever get USED to them. But...Charlie screaming isn't the same as the baby screaming. The baby screaming would send me running in terror. Charlie screaming, well, that just makes me wonder what he needs.
I called out "Charlie, Mommy is here. You're ok." Sometimes that's enough. Sometimes he just needs to hear me, or his dad, and he goes back to sleep.

About twenty minutes later he let out another blood curdling shriek.

So I got up and went in, to see if Miles had stolen a blanket, or his pillow, or was laying on him or some other brotherly offense. I walked in and sat on the bottom bunk and said "Charlie are you ok?"

And then a miracle happened.

He spoke. "I want water."

Don't get me wrong, Charlie "can" speak. However, as is the nature of autism, speech isn't all that important to him. But this time, at 3:20 am, when we were both bleary and worn out, he said clear as day "I want water."

"You want a drink?" I started hunting for the sippy cup that they take to bed, and that Miles hoards (Geek points to me I nearly spelled that horde) and found it under Miles pillow.

"I want drink." he said as he took it and took big sips.

"Are you ok now?" I asked him.

"I want tickle."

Imma take that as a yes.

I chose a picture from winter, because it's hot, and I wish it wasn't.Tweet

Sunday, June 10, 2012

My video card is slowly dying. It's a painful death and I'm dealing with it but one of the things I am doing to delay the planned obsolescence of this piece of hardware is keeping it nice and cool (it's overheating, I dunno it's the fan or something).So, today I sit down, boot up my machine, and turn around and turn on the oscillating fan behind me. It's a bit high, so I reach down to adjust the height - I want it pointing directly at the tower. Then, I can't make it budge.I lean further, turn further in my chair and twist the adjustment point - still nothing.So - I scoot up closer, put my foot on the base, wrap both of my hands around it and kind of lean my head against the back of the fan.

What happened next was the opposite of the picture above.

My hair gets sucked into the fan and starts going PLINK PLINK PLINK out of my head in small clumps.

I don't know how but it actually occurred to me at that point to turn the fan off. Amazingly, I was able to extract my head from the fan as all the hair it grabbed was neatly ripped out and I wasn't trapped.

My video card is slowly dying. It's a painful death and I'm dealing with it but one of the things I am doing to delay the planned obsolescence of this piece of hardware is keeping it nice and cool (it's overheating, I dunno it's the fan or something).
So, today I sit down, boot up my machine, and turn around and turn on the oscillating fan behind me. It's a bit high, so I reach down to adjust the height - I want it pointing directly at the tower. Then, I can't make it budge.
I lean further, turn further in my chair and twist the adjustment point - still nothing.
So - I scoot up closer, put my foot on the base, wrap both of my hands around it and kind of lean my head against the back of the fan.

What happened next was the opposite of the picture above.

My hair gets sucked into the fan and starts going PLINK PLINK PLINK out of my head in small clumps.

I don't know how but it actually occurred to me at that point to turn the fan off. Amazingly, I was able to extract my head from the fan as all the hair it grabbed was neatly ripped out and I wasn't trapped.

Saturday, June 09, 2012

The local autism awareness and support group SPECTRUM had their annual Family Fishing Day and we made the trek over to Grayson (the other side of the earth) to we could have a great day with other families like us.I kind of love this event, we've been a few times in the past.No one looks at us like WTF here. No one wonders what is WRONG with those kids and why do they act like that?Because it's full of a hundred or more families EXACTLY LIKE US. Siblings who do without, or constantly make concessions because of the special person in their family. Parents who always look slightly weary and worn out.

But it's so much fun.The fishing is free and there are horse back rides as well as a petting zoo and lots of other fun, sensory friendly and kid friendly things to do, plus a great day by a beautiful lake hosted by a lovely family who allows us to do this on their land every year.

We had a great day in the sun. A day where we didn't have to look around to see if we were a spectacle, where it didn't matter how crazy we acted.

The local autism awareness and support group SPECTRUM had their annual Family Fishing Day and we made the trek over to Grayson (the other side of the earth) to we could have a great day with other families like us.
I kind of love this event, we've been a few times in the past.
No one looks at us like WTF here. No one wonders what is WRONG with those kids and why do they act like that?
Because it's full of a hundred or more families EXACTLY LIKE US. Siblings who do without, or constantly make concessions because of the special person in their family. Parents who always look slightly weary and worn out.

But it's so much fun.
The fishing is free and there are horse back rides as well as a petting zoo and lots of other fun, sensory friendly and kid friendly things to do, plus a great day by a beautiful lake hosted by a lovely family who allows us to do this on their land every year.

We had a great day in the sun. A day where we didn't have to look around to see if we were a spectacle, where it didn't matter how crazy we acted.

Monday, June 04, 2012

When you have one child, you don't know what normal is. (I'm going to say normal and everyone who insists that "typical" is what I should say, can go suck an egg.)

That child is the center of your universe and all children that come behind are then judged based on that first child.

Except for us - next, 19 months later we had TWO children and something was off. There were two of them, and they weren't at all like the first boy. We spent a lot of years buying in to the "they're just twins" crap until we had to realize that they were in fact different and not in a unique snowflake way.

I think we've adjusted, all of us, to the fact that like Marge Simpson says, they're our special little guys.

What is suddenly hitting me in the face though, isn't their disability, it's how blind we were to it for so long as our two year old goes racing headlong past them verbally. Putting together complex sentences, learning the ABCs herself. Holding conversations with us.

She's passing them at the age of two and leaving them behind. I don't know how we didn't see it, except that most likely you don't want to see that your children aren't right. You don't WANT to hear those words or learn how the short bus works or have occasion to go to the Special Olympics other than as a philanthropist.

They asked us, when we were tested for autism "Do they express need?" and we mumbled stuff about how they would cry (at the age of four) or throw fits. But then they asked, "But do they point? Do they name things?" and we had to say no.

I was reminded this, when this past weekend going down the stairs with the girl as she is telling me "I want choc yolk (chocolate milk) and gogurt and breffass!"

When you have one child, you don't know what normal is. (I'm going to say normal and everyone who insists that "typical" is what I should say, can go suck an egg.)

That child is the center of your universe and all children that come behind are then judged based on that first child.

Except for us - next, 19 months later we had TWO children and something was off. There were two of them, and they weren't at all like the first boy. We spent a lot of years buying in to the "they're just twins" crap until we had to realize that they were in fact different and not in a unique snowflake way.

I think we've adjusted, all of us, to the fact that like Marge Simpson says, they're our special little guys.

What is suddenly hitting me in the face though, isn't their disability, it's how blind we were to it for so long as our two year old goes racing headlong past them verbally. Putting together complex sentences, learning the ABCs herself. Holding conversations with us.

She's passing them at the age of two and leaving them behind. I don't know how we didn't see it, except that most likely you don't want to see that your children aren't right. You don't WANT to hear those words or learn how the short bus works or have occasion to go to the Special Olympics other than as a philanthropist.

They asked us, when we were tested for autism "Do they express need?" and we mumbled stuff about how they would cry (at the age of four) or throw fits. But then they asked, "But do they point? Do they name things?" and we had to say no.

I was reminded this, when this past weekend going down the stairs with the girl as she is telling me "I want choc yolk (chocolate milk) and gogurt and breffass!"

Saturday, June 02, 2012

So I opted for an endometrial ablation vs. hysterectomy to stop the monthly horror show that is now affectionately and accurately known as SHARK WEEK. I started taking various drugs two days before to reduce inflammation and I guess make me feel better in general. The day before I took a drug called misprostol to make my cervix soften and thin so they could yank it apart and do what they needed to do.

The morning of I had some Xanax and Percocet. My first concern was that the Percocet was only 325 - what WUSS takes only 325 mg of Percocet? What pain is this supposed to help?

When I got to the doctor's office the nurse informed me I needed more Percocet so YAY. Then I looked like THIS.

So, that's me sort of "Hey man I am ok" but am beginning to feel more than a bit checked out.

I went into the room after apparently plurking QUITE a bit to my friends online. I got all prepped up and the nurses held my hands while I got shots in the cervix - which were really like "damn that's annoying and not fun", rather than torture. I believe I said "WOW THIS REALLY SUCKS". The doctor also asked for the "longer" speculum, and I said "But not the circus freak size one, right?" and he burst out laughing and said "No, you don't need the circus freak size one....but we DO have one of those."

YAY for this piece of information right?

So then, what happened is, as the drugs were really washing over me and my entire crotch area felt weird and numb, is that apparently he got a look inside - I dunno wtf he was doing then, and said "Oh this isn't going to work."

I have mentioned it before, and he was aware of it, but I have this condition called a bicornuate uterus .

Apparently when pregnant, it stretches out just fine, which is odd and it shouldn't. I shouldn't be able to carry 9 pound babies to term much less great big old twins but I did. So, never say never I guess. However, when not pregnant and not all stretched out, I apparently have a really pronounced septum dividing the uterus, and introducing a balloon into the uterus for the procedure wouldn't work.

So then, drugged, weirdly wet on the back of my shirt (wtf is that?), I called my hubby to come fetch me and have instructions to call the surgery scheduler next week so we can do it in the OR at the hospital with full on drugs and stuff.

Round 1, failure. I slept my day in a serious drug haze yesterday and lost my entire day basically. I woke up today crampy and feeling kind of bleh.

So I opted for an endometrial ablation vs. hysterectomy to stop the monthly horror show that is now affectionately and accurately known as SHARK WEEK. I started taking various drugs two days before to reduce inflammation and I guess make me feel better in general. The day before I took a drug called misprostol to make my cervix soften and thin so they could yank it apart and do what they needed to do.

The morning of I had some Xanax and Percocet. My first concern was that the Percocet was only 325 - what WUSS takes only 325 mg of Percocet? What pain is this supposed to help?

When I got to the doctor's office the nurse informed me I needed more Percocet so YAY. Then I looked like THIS.

So, that's me sort of "Hey man I am ok" but am beginning to feel more than a bit checked out.

I went into the room after apparently plurking QUITE a bit to my friends online. I got all prepped up and the nurses held my hands while I got shots in the cervix - which were really like "damn that's annoying and not fun", rather than torture. I believe I said "WOW THIS REALLY SUCKS". The doctor also asked for the "longer" speculum, and I said "But not the circus freak size one, right?" and he burst out laughing and said "No, you don't need the circus freak size one....but we DO have one of those."

YAY for this piece of information right?

So then, what happened is, as the drugs were really washing over me and my entire crotch area felt weird and numb, is that apparently he got a look inside - I dunno wtf he was doing then, and said "Oh this isn't going to work."

I have mentioned it before, and he was aware of it, but I have this condition called a bicornuate uterus .

Apparently when pregnant, it stretches out just fine, which is odd and it shouldn't. I shouldn't be able to carry 9 pound babies to term much less great big old twins but I did. So, never say never I guess. However, when not pregnant and not all stretched out, I apparently have a really pronounced septum dividing the uterus, and introducing a balloon into the uterus for the procedure wouldn't work.

So then, drugged, weirdly wet on the back of my shirt (wtf is that?), I called my hubby to come fetch me and have instructions to call the surgery scheduler next week so we can do it in the OR at the hospital with full on drugs and stuff.

Round 1, failure. I slept my day in a serious drug haze yesterday and lost my entire day basically. I woke up today crampy and feeling kind of bleh.